SOS 4 ALS

Advocate for people with ALS. This "rare" disease has taken 3 from my life. *Drugs in bodies, hope for souls NOW.* Opinions expressed are my own.

[SOS 4 ALS @SOS4ALS]

@RuvatiUSA I had one of your workstation sinks installed. I can not get the adhesive from the sticker off with oil and a microfiber cloth. How very disappointing that you would put a consumer in this position. @RuvatiUSA how do I remove the adhesive without ruining the sink?

[Shah Minokadeh, M.D. @MinoShah]

Just in the last 12 months, there have been 15 Accelerated Approvals for oncology treatments. These treatments ALL require postmarketing confirmatory trials to verify clinical benefit.

FOR YEARS so many have fought & #DiedWaiting for the same @US_FDA urgency/flexibility for safe/effective #Nurown in 100% FATAL #ALS.

HOW MANY MORE HAVE TO DIE before the @FDACBER treats #ALS with the same urgency and flexibility as cancer treatments?

Congress, DEMAND that @DrCaliff_FDA exercise regulatory flexibility for a disease WITH NO SURVIVORS since 1869.
Grant NUROWN Accelerated Approval with a Phase 4 postmarketing study.
#NurownIsSafe #NurownWorks

https://t.co/OebYqjBKqc

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepDonBacon @cathymcmorris @RepSarbanes @RepCardenas @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @RepLoriTrahan @BernieSanders @PattyMurray @SenBobCasey @SenatorBaldwin @SenatorHassan @SenTinaSmith @SenatorHick @SenMarkey @SenBillCassidy @SenMullin @lisamurkowski @SenatorBraun @RogerMarshallMD @RepJasonCrow @TeamCalvert @RepBrianFitz @ChrisCoons @RepAndyHarrisMD @SenJohnThune @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis

[I AM ALS @iamalsorg]

An update of ALS Signal shows a trial for people with disease onset ≤ 5 years. It’s rare that people who have had symptoms greater than 24 mo. are eligible to participate in trials. Check out Cellenkos’ CK0803 (Tregs) Phase 1 trial now recruiting. https://t.co/AwVKC8kBTk

[SOS 4 ALS @SOS4ALS]

#EndALS #US_Fda #FDACBER #NurOwnWorks

[Smithstrongmom @Smithstrongmom1]

My son, Josh is #livingproof that #Nurown works. His breathing improved significantly!! He is 33 years old, 5 years since onset of #ALS.

[SOS 4 ALS @SOS4ALS]

Good read about how @Cigna prioritizes $$$ over patient care https://t.co/cu6xFK8hHy

[SOS 4 ALS @SOS4ALS]

.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @JohnCornyn @tedcruz #ALS

[Kylan Morris @KylanMorris1]

#Nurown WORKED for my mama - thx to EAP: my family and the #ALS community got to soak up 2 more precious summers of @sandymorris333 magic💫 #NurOwn worked in the final phases of #ALS for my person, I wonder the effect this treatment might have on a newly diagnosed #PLWALS ?! ✨

[SOS 4 ALS @SOS4ALS]

#NurOwnWorks

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

This is what we'e been fighting for!

Thank you @DrCaliff_FDA & Dr Peter Marks of @FDACBER for hearing the pleas of the #ALS community.

People like @klink52 @kandysimons @stevens_nation @ThurmanTough @Debbellina @Smithstrongmom1 @pjgreen & @nicolecimbura know #NurOwnWorks

[SOS 4 ALS @SOS4ALS]

https://t.co/zk9rcz18M9

[SOS 4 ALS @SOS4ALS]

.#BrainstormCellTherapuetics got an AdCom for #NurOwn!
Stay tuned for what is next! Happy happy Monday! :)

[SOS 4 ALS @SOS4ALS]

@bsw5020 @MinoSean He (@MinoSean) is such a passionate, faithful, intelligent advocate. He inspires me and many to stay focused with a sense of urgency in the fight for #ALS.

[SOS 4 ALS @SOS4ALS]

@leanne_yacyshyn Praying for your comfort 🙏🏻🙏🏻🙏🏻

[Lisa's Legacy for ALS @LisaLegacy4ALS]

.@DrCaliff_FDA @US_FDA the #ALS community delivered you a petition to grant #NurOwn a transparent & informative AdCom 3 months ago. While we wait, people have died from this 100% fatal disease. Provide the flexibility & speed you promised for ALS. Schedule The AdCom. #EndALS

[SOS 4 ALS @SOS4ALS]

#NoAdComNoVoice #EndALS #US_Fda #FDACBER #NurOwnWorks

[Sandra Abrevaya @sabrevaya]

Every single day ALS families are dying while we wait for a vote on this effective therapy.

@FDACBER @DrCaliff_FDA please schedule the vote on NurOwn.

The world is watching and waiting for you to take action.

[SOS 4 ALS @SOS4ALS]

#NoAdComNoVoice #EndALS #US_Fda #FDACBER #NurOwnWorks
@RepKeithSelf @SenTedCruz @JohnCornyn @DrCaliff_FDA

[Shah Minokadeh, M.D. @MinoShah]

Augie died of #ALS yesterday.

HOW MANY MORE HAVE TO BURY LOVED ONES before @DrCaliff_FDA @FDACBER treat 100% FATAL ALS with the same URGENCY/FLEXIBILITY as cancer treatments?

Congress, DEMAND an #AdComm hearing for #Nurown to allow #RealWorldEvidence of efficacy shared. #NoAdComNoVoice

ALS=broken bodies + no Big Pharma allies.
DYING ALS NOW & FUTURE DIAGNOSED NEED CONGRESS.

ALS IS NOT RARE. You or your loved one could be next.

@RepGuthrie @RepLarryBucshon @RepAnnaEshoo @michaelcburgess @boblatta @RepMGriffith @RepGusBilirakis @RepBillJohnson @RepRichHudson @RepBuddyCarter @DrNealDunnFL2 @RepMMM @JayObernolte @cathymcmorris @RepRaulRuizMD @RepDebDingell @RepAnnieKuster @RepRobinKelly @RepBarragan @repLBR @RepAngieCraig @RepKimSchrier @BillCassidy @RandPaul @SenatorCollins @SenMullin @lisamurkowski @SenatorBraun @SenatorRomney @PattyMurray @RepJasonCrow @TeamCalvert @RepBrianFitz @RepTerriSewell @ChrisCoons
@RepAndyHarrisMD @DickDurbin @SenJohnThune @RepDianaDeGette @RepMikeQuigley @janschakowsky @rosadelauro @RepJohnCurtis @DorisMatsui @chairmang @RepScottPeters @BernieSanders

[SOS 4 ALS @SOS4ALS]

#NoAdComNoVoice #EndALS #US_Fda #FDACBER #NurOwnWorks

[AZ Latina ☮️🌊🟦 @aVoice4ALS]

Before 2019 Guidance Doc, @US_FDA promised #ALS community "small changes" would justify approval

Changes on #NurOwn?
☑ Standing out of wheelchair
☑ Breathing w/o bipap
☑ Swallowing food
☑ Walking 7 miles
☑ Operating your wheelchair
☑ Holding your penis
☑ Halting paralysis

[SOS 4 ALS @SOS4ALS]

#NoAdComNoVoice #EndALS #US_Fda #FDACBER #NurOwnWorks

[Rain Consulting Group @RainConsulting]

Sometimes we need to look at our working agreements to the American people. @DrCaliff_FDA As public Servants please help those living with #ALS today by remediating the #NurOwn type 2 error. Delays=Death. Speed up innovation so pALS have a chance to improve their health.

[SOS 4 ALS @SOS4ALS]

.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @RepKeithSelf

[SOS 4 ALS @SOS4ALS]

.@Cigna, your flawed decision to deny people on your insurance coverage for Relyvrio is inhumane. Your decision impacts real people who are trying to fight a 100% fatal disease. They don't have time to wait. Reverse your decision now. @JohnCornyn @tedcruz #ALS

[SOS 4 ALS @SOS4ALS]

@LisaLegacy4ALS @sandymorris333 @RepSherrill @CoryBooker @SenatorMenendez Love this so much!

[Brian Wallach @bsw5020]

I am living with a terminal disease. I am also a patient advocate.

I am a damn good advocate, but I need your help. The more followers I have, the more I can get government and pharma to pay attention.

So my ask is: Will you follow me so we can change the world?